Learning and memory require balance between inhibition and excitation in the brain. In Down Syndrome, according to Dr Omar Khwaia, there appears to be excessive inhibition by GABA neurons. How to overcome this? Currently Roche is in clinical trials for a drug that decreased excessive inhibition in mouse models. There are other options now but first you have to know the Down syndrome behavioral types.

Down Syndrome behavioral phenotypes are:

Language deficits

Social Strengths

Visual processing is better than verbal processing

Motor deficits

Poor problem solving

Task persistence

Down syndrome Strengths:

Visual spatial processing

Core social relationships

Receptive language

Relative Challenges:

Verbal processing

Expressive language

Motor function

Goal-directed behavior

Distractable

Stubborn/strong-willed streak

Lisa Daunhauer, ScD and Deborah Fidler, PhD have identified tasks parents and teachers can do to improve executive functioning in Down syndrome. Executive functioning is the cognitive processes integral to adaptive, goal-oriented actions.

Executive functions are:

Working Memory

Motor Planning

Shifting

Inhibition

To improve EF in Down syndrome, Lisa and Deborah suggest:

For Inhibition: Games like Red light/Green light and Duck, Duck, Goose plus daily routines that include an element of delay (sitting before television is turned on.)

For Working Memory: Games like memory and Simon Says plus daily routines that include organizers, activity boards, and schedules. Prompts are good too; such as what goes next, what just happened; first this than that.

For Shifting: Games that use a search or scan of objects on a page plus reading joke and riddle books.

We are walking for Down syndrome Awareness on October 6, 2012 at the Detroit Zoo. Marty’s parents have gathered almost 90 people for the Marty’s Monkeys team. What an incredible showing of love! Participants include family, friends, church family, co-workers, etc.

I wish that each year they would pick one aspect of the Down syndrome life to focus on. Just so people are aware that Down Syndrome is not a cute condition nor it is not a happy condition–both adjectives I have heard describe the child who has the condition. Down Syndrome is nothing to be ashamed of nor is it something to be glossed over. It is what it is and that can be different for each person.

Before Marty was born I had never seen a Down syndrome baby nor a Down syndrome toddler! There are more than 50 features of Down syndrome but not every person with Down syndrome has all the same features or health problems. For most of my life I believed that the most significant aspect of disability for Down syndrome was cognitive ability but most children with Down syndrome have mild to moderate cognitive disability. I have stated previously that I feel hypotonia or low muscle tone has been Marty’s greatest struggle. What gets him through the struggle? His family’s love.

I think for me this year if I was to choose one thing for people to be aware about Down syndrome is that those with Down syndrome need to be loved.

On a recent Saturday Marty spent the afternoon with me. Just Marty and I, it was a big deal and a beautiful day! I do not get to spend too much time one-on-one with Marty outside of the home. Heading out we walked hand in hand to my car and he slipped right into the car seat.

I drove with an eye out for a playscape. Remembering a new school I drove there knowing the equipment would be new and safe. When we arrived, I was glad Marty had the entire schoolyard alone. He could do whatever he wanted! As soon as he was out of the car he made a bee-line to the colorful structure. There were stairs, slides, swings, and things. He played until he was ready to go.

Next stop was the pet store. Marty loves animals and the store we visit has a great variety-birds, turtles, mice, and bunnies. Plus there were dogs and cats roaming the aisles with their owners. We watched a turtle try several times to get from the water to a drying platform. Marty laughed each time it lost the struggle and dropped back into the water. Soon it was time to go to my house for lunch.

Marty watched some Mickey while he ate until my Woadie cat walked by and the chase began. Woadie is a tolerant cat because he loves being the center of attention. That cat will do almost anything to be watched including Marty’s not-so-gentle pats.

Eventually Marty made it to my room where he always goes to look at a picture of my family taken when his mom was about 10. He always points to her first then Uncle Ryan, Aunt Holly and finally me. This time before leaving he noticed my grand collection of jewelry-making beads. He smiled and pointed but I told him those were Grammy’s. He was pretty insistent about looking at the beads so I placed a red velvet box on the floor that contained large handmade oblong beads. Quite heavy, I thought they could withstand small hands. Marty sat on the floor to play his favorite game, TOPI (Take Out, Put In). He loves all things repetitious like his train going round and round or TOPI over and over and over.

There was a long game of TOPI until I noticed the beads getting chipped. Luckily Woadie slowly walked by and the chase was on again. After a little walk in the yard, we came in and I cleaned up the lunch dishes. When I stepped back in the living room, here came a smiling Marty carrying a large container of beads with a sliding top (and it was sliding). Only about 50 beads dropped to the floor–time for another game of TOPI!

With the beads all picked up, I thought we could work on his pouring skills. I showed him what to do with the container of loose beads and a plastic measuring cup. Success! He was so careful and so proud of his new skill! He really concentrated and time ticked away. His father would pick him up soon, I needed to get Marty’s attention away from the beads or he would never go home. I set up his blocks which he went and inspected. He came looking for his beads but the container was no longer where he left it.

He ran from the room straight for my heavy wood coffee table. He banged his head and fell to the floor.I was broken-hearted he felt so disappointed! I wished I had communicated so he understood it was time to put the beads away.

I do not know why he bangs his head on things==sometimes he just uses his hands, smacking this temples in frustration. He has not learned coping mechanisms nor is he able to verbalize yet. I wonder if there is some static noise he is trying to quiet when he gets upset. Something we need to work on.

This has been a big week for Marty, his first week of preschool! He has had regular interaction with physical and occupational therapists since he was 6 months old. He has done well all along. His mom had her first tears of realization that her boy can handle it on his own and I could not resist in picking him up from school with her.

Most mornings Marty has a relaxing time having breakfast, watching Sesame Street, playing; now his mornings will be more regimented. Today Amber emailed Marty’s teacher to see if he walked to class ok for her this morning. They had gotten there a little late and his group was already leaving the main hall for the classroom. The teacher assured amber that yes–he joined the class corral rope, found his cubby in the classroom, and got ready for breakfast on his own. Brought tears to her eyes that he would be okay.

When we arrived to pick him up, his brother Silas was asleep but came in with us. I walked anxiously down the hall and there he was the last child in the room just sitting there at the table waiting with his book bag on and the smile he had for me was priceless!! We hugged and he was ready to go. We all walked hand in hand out the door. He was such a big boy. He was hungry as soon as we strapped him in the car seat so I suggested chicken nuggets–his favorite. You know he is only three but he certainly acts like he is 5!

My daughter asked me to go with her to Marty’s first visit to the dentist–had to be done since dental health can be problematic for children with Down Syndrome. Due to hypersensitivity Marty likes limited touch so we knew this was not going to be a happy visit. Marty’s parent had already started a teeth brushing routine which included a bear hug to hold him down. He has progressed to the point where he is not crying too much.

Marty’s patients had chosen a pediatric dentist who came highly recommended. We were all nervous in the waiting room. Marty sped away at one point down the hall to the exam room–he is getting quite fast on his feet and I could not catch him–at least it brought smiles to the staff. Since he was unable to sit still in the waiting room, I thought if he kept this energy up, Marty would be climbing out of the exam chair very unhappy.

I noticed that no parents went with their children down that hall and worried that Marty would be led away with terror induced howls. His mom assured me though that Marty would not go down that hall alone–we were both going.

Finally his name was called just as he was losing patience with the confined arena. We were escorted to a small room with no question about our presence. Fortunately there were toys available as we waited for Dr Mak whose first name also happened to be Martin. He talked with Amber about her concerns while I played with Marty. The time for the exam came but there was no evidence of tools or strange chairs; we stayed right in that room. Dr Mak had Marty sit on Amber’s lap facing her then he tilted him backwards. Marty was not happy but his cries opened his mouth and the exam was quick and thorough.

No x-rays required–they would probably be useless anyway. The conclusion: Marty probably would not have canines on top or bottom–time would tell. His teeth and gums were in great condition. Return visit in 6 months.

Marty came into my arms after the exam and snuggled until the nurse brought him stickers–cookie monster and pluto. The smile came back and the tears ended. He was ready to go, a milestone completed with minimal disruption; at least nowhere near what I imagined.

Sometimes I think of changes that will occur for Marty as a Major Life Event. Sometimes I wonder how he will cope and he always amazes me with his stress management skills!! He may not cope well with minimal, scheduled Elmo video-viewing but he handled the arrival of his baby brother very well. Yet I still hold my breathe when I know a change is about to occur for him.

As I said before, he adores his room–it is his space. He proudly leads me there to show me the current “game” he has created and invites me to play. Previous games have been throw-the-toys-out-of-the-crib, throw-the-ball-into-the-crib, hide-the-toys-under-the-blanket.

His crib was transformed to a toddler day bed a few months ago. He clamored in and more games ensued. His brother needs the crib now, so his dad put together a toddler bed for him. His mom and I rearranged the room and she transformed the day bed back into a crib. Now there will be two alarms that may go off–baby monitors for both beds!!

When we were ready to show him his new room–I held my breathe once again for this “Major Life Event”. He entered the room and tried to climb up the side of the crib but when we redirected him to his new bed, where his favorite toys and blanket were waiting to welcome him, he climbed in and we played a few of his current games.

That night he did sleep a few hours in his new bed and also found other sleeping arrangements in the room but I am confident he will adjust. So do I really have to hold my breathe and have some worrisome thoughts about his feelings and response to a change? Actually I think being prepared for the change, being matter of fact about the change, linking his interests to the change, and experiencing it with him carried us through.

A couple was suing a health center for ‘wrongful birth’ after a prenatal test intended to pick up whether a fetus has Down syndrome failed – and their daughter was born with the condition.
Ariel and Deborah Levy won their “wrongful birth” suit against Legacy Health System, arguing they chose to continue their pregnancy based on what doctors told them. According to the Daily Mail, the Levy parents from Portland, Oregon, who have two other children, said in the lawsuit they would have aborted their daughter Kalanit – who is now four – if they had known she had Down Syndrome. Attorneys for the defense claimed Legacy followed correct procedures and noted the test did not reveal a problem becuase it was mosaic Down Syndrome meaning a significant number of cells do not contain an extra 21st chromosome.. Studies suggest that more than 89 per cent of women choose to abort a fetus with Down Syndrome.
There should have been strings attached to the award to protect Kalanit with the 2.9 million put in a trust for her. It seems ironic that the parents received all that money for a child they would have aborted. I am stunned that 89% of Down Syndrome fetuses are aborted–they do not know the blessings they are missing!

I can understand Kalanit’s parents were worried about the costs for their child’s needs. I worry about expenses for my grandson with Down Syndrome too. The only money I am collecting though is in a glass milk bottle on my kitchen counter where I store all my change for him–it is all I can afford. I wish I could do more!